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Monthly Archives: November 2011

Today SCCA called me to schedule some appointments that would begin the tissue typing of her siblings for a possible bone marrow transplant. I decided that right now was not the time to take on that particular challenge. It is calls like that which bring into the glaring light the reality of what we are faced with as a family.

Our mother has been such a strong and constant presence in our life that it is difficult to fully grasp that it is now her that needs us to be strong. I guess it’s also a testament to how she raised us to find that, somehow each of us possess that inner strength, it has been a silent gift living in each of us.

There may be many of you who do not know the whole story and so I thought I would just post a very quick timeline leading up to where we are now. Very sadly for all of us who love mom it has been a very quick decline in her health.

~20 September – Mom had been having back pain for several months and had been trying physical therapy, rest, heat, cold, pain medication and more to combat the pain. Nothing worked and after landed awkwardly from a high step she finally figured that she had really injured something in her back. She could not drive her car and so Joe and Laura went and picked her up from her house and brought mom to live with them.

October 6th (her birthday) – Mom’s pain got worse and she was finally able to schedule a detailed MRI with Group Health. The diagnosis shocked us all, mom had Stage 2 Multiple Myeloma. A few more tests and the diagnosis was confirmed and we had the information that we needed to formulate a plan.

1 November – 12 November – Mom undergoes a 10 day cycle of radiation in an attempt to shrink the tumors in her back and help to limit the pain. By the first of November mom had already lost a lot of weight and was not walking very well. The pain in her back is limiting her movement so much that we want to try to control that pain before we begin chemotherapy.

14 November – Slightly more than a month from the initial diagnosis we had moved mom to Seattle to begin chemotherapy treatments. There are a lot of reasons for this move to Seattle. Myeloma does not affect all people equally and mom had some genetic markers that would make her treatment more of a challenge. The Seattle Cancer Care Alliance has a top notch Multiple Myeloma clinic that sees many cases of complicated Myeloma each year and in cases like mom’s, experience matters. So on November 14th Mom begin her treatment for the Myeloma with day 1 of a 21 day chemotherapy cycle.

19 November – We had already been the the ER once this week after monitoring blood sugars and discovering that the chemo drugs and steriods that mom was taking were causing her blood sugars to spike. We got some insulin and were working with the doctors to develop an insulin schedule that would work to keep her sugars down on the days when she is taking the most steriods. Now we were back in the ER because mom had developed a fever on Saturday.

One of the side effects of both the chemotherapy and the myeloma is that moms immune system was very compromised and she has a difficult time fighting off infections. This means that every fever is a potentially big issue and unfortunately that was the case here.

24 November – After being admitted by the ER docs to an observation floor at Group Health and later transferred to Virginia Mason mom was finally diagnosed with two different infections in her lungs. She was treated with the proper medications for these infections but once the antibiotics began to work on the virus, it caused a tremendous amount of inflamation in her lungs. At about noon on Thanksgiving day our mom was intubated (breathing tube placed in her mouth and down into her lungs) and she was placed on a respirator and sedated.

Her prognosis at this moment is unclear. She is getting the right treatment for the infections and is being monitored intently for any change in her condition. Mom’s blood counts are improving and so she is more armed to fight the disease but this is not an easy fight and the side effects of the fight itself will take a toll on her recovery.

We are there with her daily and we appreciate all of the kind words that you send. We will pass them along to mom and we believe that she can hear us and knows that all of you are pulling for her.

We will all continue to update this page with any information on her condition and very much appreciate all of the support from each of you.

After all the Thanksgiving parties, I made the decision to stay in Seattle to spend some more time with my mom as she battles to get off the ventilator. As Matt and I discussed last night it is hard to imagine that only a few short months ago our mom was running around chasing our kids. Mom loves being a Grandma and quite honestly she is very good at it. She has an animation and joy for life that all the kids are drawn to. Her passion is infectious and we all miss it very much.

As I sit with her, I try and cut through all the bells, honks and dings of the equipment by thinking about some of my recent memories of my mom. I was blessed that she lived with my family for the last two and a half months prior to coming over to Seattle. At this moment the one memory I keep playing over and over in my mind is the first time she put on her back brace. Over the previous weeks, mom was dealing with very severe back pain that was basically a side affect of the myeloma cancer. The first time she put on the back brace–the minor relief it gave her, she was inspired to do the jig. I remember it clear as day, after all the time she had spent with her walker she took this moment of minor relief to do the jig. This is the type of memory that surfaces time and time again with my mom. She can take even the smallest ray of light and turn it into the sun.

Though it is very difficult to see mom in her condition, I know if anyone has the strength to move past this…she does. She will fight with all her passion in the hopes to once again do a little jig for all of us.

Thanks to Joe’s birthday, readership has increased. Today, I took my mom to visit Jan in the afternoon. Her oxygen support level was turned down which is good. I told my former-RN mother everything I knew about the different tubes and stuff but I don’t know very much. It was much calmer in her room today. Yesterday seemed like nonstop visits from doctors and nurses and lab techs. Today, no interruptions, at least not during our visit.

My mom told her we’re praying for her and I let her know about the other people who commented on Joe’s Facebook that are praying for her. She scrunched up her nose when I wiped a tear (irritation or emotion, I don’t know–it was there when we arrived) from her eye. And I thought of the verse in Revelation, copied and pasted here for my edification: He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

I titled this post The Grandma Bond because my mom and Jan have spent lots of time together while taking care of the grand kids. My mom is quite fond of Jan and even though she is soft spoken, often says: Jan is such a nice person! Which is about as exuberant of praise my mom doles out about anyone. I really appreciate that the two grandmas are bonded by the shared love of their grand kids and also personal affection for each other.

Thanksgiving has come and gone but our thankfulness remains and is also tested. Last last Saturday, November 19, Jan was taken to urgent care because she was running a fever. She’d received her first chemo treatment two days before and was “feeling really weird”.

I saw her last Tuesday and met her sister Claudia who looks so much like Jan that Maira called her “gramma” too. It was a wonderful quick chat with Jan before she was whisked away for a bronchial treatment that I’ve forgotten the exact name of. And a lovely conversation with Claudia.

Thanksgiving Day, my other sister Jane hosted dinner with many Ciesielskis present and that was a lot of fun chaos, yummy food, and shared love for Jan. Stephanie, Joe and Laura, and Matt took turns spending time with Jan in the hospital.

Today I visited Jan in Critical Care and it was shocking to see the respirator support. If I thought she was hooked up last week, this was more. Although she wasn’t awake, I told her about the past few days happenings and perhaps it’s my over active imagination but I do think she breathed more on her own while I was talking with her. It could also be, as the nurse said, that she was breathing fast as the fever she had causes higher metabolic activity. Anyway. I like to think she hears. As Matt said later, and that’s where the title of this post comes from, “the definition of ‘good’ keeps getting redefined.”

Matt, Joe, and Delphine came soon after my arrival and the kids visited her too and Del hung up this Thanksgiving craft that the kids helped make.

Just got back home from seeing Jan in her new apartment downtown. Met Julie her sister-in-law and helped unpack a little. Matt, Del, and the kids were there to say hi and eat dinner and outfit the place and do some planning.

I was intending to show Jan how to post herself but the wifi wasn’t set up. To paraphrase Matt: “You’d think Paul Allen’s place would have better technology.” The apartment is nice and functional and getting cozier with photos and the nice basket full of gifts and fun things I’m assuming is from Jan’s retirement party that she had last week in Spokane.

I imagine lots of people are missing her in Spokane. But I’m glad to be able to see her in Seattle so it goes both ways.

I ran into this picture the other day on my phone and every time I see it reminds me of “Butterfly Kisses”. This is the name my mom has given to the day she found out she had cancer. Mom got the call from the doctor and after she hung up the phone she laid her head in her hands and began to cry softly. Maira came over to her Grandma and started to pepper her with soft little kisses all over her arm. I am sure Maira will never know how much that exact timing meant to her Grandma, but I will!!

I’ve invited Jan’s older son, Matt, and her younger son’s wife, Laura, to contribute. So hopefully we’ll be hearing from them soon. I asked Matt what the update was on her plan of attack (do we like the military metaphors or not?) and this is what he had to say:

Daily radiation treatments this week in an effort to reduce the overall pain level. Begin a biphosphate treatment today (calcium replacement therapy) to help slow bone loss caused by the cancer. She will be fitted for a back brace next week (to help stabilize her back and hopefully reduce some of the pain).

Chemo begins after radiation is completed (around 14th of this month).

Jan Frank is my sister’s mother-in-law, my brother-in-law’s mom, my nieces and nephew’s grandma, my friend, and so much more. Here’s a photo of Jan from when we went whale-watching together.

sunset whale watching in Hawaii, April 2010

Jan was recently diagnosed with multiple myeloma, which you can read more about here and here. Pending insurance approval of medically advanced bone marrow transplants, she will begin treatment with radiation and back surgery followed by chemotherapy and the bone transplants.

Jan is not one to sit still and loves to chat. In her fragile state, we thought a blog was in order to help you keep up-to-date with her progress and also keep her in touch with you. Please feel free to comment and ask questions. I know the community of cancer fighters and survivors is strong in the blogosphere.